Seanad Éireann debate -
Wednesday, 20 May 2009

Vol. 195 No. 10

Organ Retention.

Senator Maria Corrigan

I thank Senator Doherty for facilitating me with a change in the order this evening. I welcome the Minister of State and thank the Cathaoirleach for allowing me to raise this very important matter. The issue of organ retention by Irish hospitals is highly emotive for the families of those involved and of significant national importance.

In 2007, following the review carried out by the HSE on organ retention, the Minister for Health and Children agreed to establish an independent audit of 32 hospitals. This was done in response to the concerns raised by Parents For Justice about the accuracy of the audit performed by the HSE. The independent audit has been undertaken by Michaela Willis, chairperson of Britain's National Committee Relating to Organ Retention and former chairperson of the Bristol Heart-Children Action Group.

Parents and families have confidence and trust in Michaela Willis and the audit she is carrying out. There is, however, growing concern about the delay in the publication of this independent audit, and I would appreciate if the Minister could answer the following three questions because the parents and families would greatly appreciate knowing more about the current situation. Has the Report been completed? Has the HSE or the Department of Health and Children received the final report? When will the full and final Report be published officially?

Minister of State at the Department of Health and Children (Deputy John Moloney)

The unauthorised removal and retention of organs of deceased patients was an issue of great public concern when it came to light. The grief and suffering of the families concerned is deeply regretted.

It has been established that the post mortem examinations were carried out according to best professional and international practice and that no intentional disrespect was shown to deceased children or their families. However, it is clear that communication between hospital staff, parents and next-of-kin was poor. People were not told that, in line with standard medical practice, organs might be retained at a post mortem.

The aim now is to ensure the health service response at the time of loss treats the deceased and their loved ones with dignity and respect. As the Senator is aware, the Government appointed Dr. Deirdre Madden, a distinguished expert on medical law, to report on key issues in post mortem practices and procedures.

Dr. Madden's report recommended that legislation should be introduced to ensure no post mortem examination would be carried out and no tissue or organ retained from a post mortem examination for any purpose without appropriate authorisation by, for example, the individual, the parents or the next-of-kin. For paediatric post mortems, Dr Madden recommended that "an independent audit must be carried out of currently retained organs in all hospitals in the State".

On foot of this, the Health Service Executive commissioned Ms Michaela Willis to undertake an independent audit. Ms Willis was a founder member and Chairperson of the British National Committee Relating to Organ Retention and was also a member of the British Human Tissue Authority. Ms Willis also served as a member of the Royal College of Pathologists working group on organ and tissue retention at post mortem examination in Britain and has extensive knowledge and experience dealing with bereaved families over the past decade.

The Minister understands that field work for Ms Willis's independent audit, which included site visits to all of the hospitals that carry out post mortem examinations in the State, has been completed. These data are being compiled and a report based on the audit is currently being finalised by the author. When this report of the independent audit is completed, the Health Service Executive will make preparations for its publication. This process will be completed later this year.

On Dr. Madden's recommendations for legislation in this area, the Department of Health and Children is currently holding a public consultation on draft proposals for human tissue legislation. These draft proposals provide for regulation of the removal, retention, storage, use and disposal of human tissue from deceased persons, and the use of donated tissue from living persons for the purposes of transplantation and research.

The types of activities covered by the draft proposals include hospital post mortem examinations and the use of organs and tissues for transplantation, research, anatomy and education. The public consultation, which was launched on 9 April, is open until 29 May. The proposals have been sent to interested parties, including parents' organisations and medical bodies, for their consideration. This information is also available on the Department's website. As the Minister said at the time of the launch, it is important that these activities take place under a clear legal framework that protects the living and the deceased and respects the autonomy of the individual and the rights of the bereaved. The report will be concluded and published by the end of the year.

Home Help Services.

Senator Pearse Doherty

Cuirim fáilte roimh an Aire Stáit. Ba mhaith liom an tacaíocht atá ar fáil ina dtithe féin do sheandaoine agus daoine tinn a phlé. Is cúis imní í an cheist seo do mhór-chuid daoine i gContae Dhún na nGall. Tá ganntanas uaireanta home help ar fáil faoi láthair. Níl an tseirbhís sin ag leathnú amach mar a bhí sé san am atá thart. Tá daoine ag cailleadh uaireanta, pá agus postanna de bharr sin.

The issue I wish to raise is the reduction and withdrawal of some home help services in County Donegal. We have heard many times from the Government that it protects the old and vulnerable but the truth from what I am hearing on the ground in County Donegal is that this is not the case. I have heard this from different individuals, from people who provide home help services, from those who are losing the service and from the daughters and sons of parents who are old and frail and need the support and the type of care that has been provided in the past.

Home help hours are being reduced or services are being discontinued. In a case of an elderly person who cannot get out of bed the hour and half of personal care that person was being given has been reduced to 20 minutes. In other cases the home help service has been discontinued at the weekend. The laundry service provided the HSE in the Manorcunningham area of County Donegal, an example of other services provided, has not been in operation since November last year and the HSE has cited that it cannot find a replacement for the person who used to provide the service.

The unions are fearful that the home help service is being run down by the Government and the HSE and that this service is in the process of being privatised. The unions in the county cannot arrange a meeting with the HSE for a number of months yet. There is serious concern about the continued provision of this service. All those issues are important in terms of meetings and how they will be resolved, but behind all of that are people who need the support and help of those who provide this service.

In the case of some people nobody calls to them except the woman or the man who provides the home help service. Many of these carers continue to provide the service in a voluntary capacity. We have debated in this Chamber the importance of volunteerism. However, we cannot ignore the fact that people need to be paid and a proper service needs to be put in place, namely the home help service, and home help hours need to be retained.

When the unfortunate situation arises that a person passes away, even though there are people waiting for and deserving of the home help service, the people who provide that service are not being given new clients. There is a fear this service is being whittled away and downgraded and that it will be discontinued and the service will be privatised in the future.

I ask the Minister of State to clarify the position of the Minister for Health and Children on the provision of this service. I am sure what I said is not unique to County Donegal but I can only speak about the real life experiences relayed to me by the elderly people concerned, their carers and families.

Deputy John Moloney

I am taking this matter on behalf of my colleague, the Minister, Deputy Harney, who cannot be here.

I thank the Senator for raising this issue as it give me the opportunity to re-affirm the Government's continued commitment to services for older people generally and, in particular, to the important area of the home help service.

Government policy in regard to older people is to support people to live in dignity and independence in their own homes and communities for as long as possible. Where this is not feasible, the health service supports access to quality long-term residential care where this is appropriate. This policy approach is renewed and developed in the partnership agreement, Towards 2016.

The development of these services nationally reflects the prioritisation and significant investment by the Government in recent years with, for example, just more than €200 million additional funding provided to develop or expand such services over the period 2006 to 2008. This additional funding related, for example, to home care packages, home help, meals-on-wheels and day respite care. Home care services are delivered either directly by the Health Service Executive or on behalf of the executive in partnership as appropriate with the voluntary sector or through private providers.

Specifically, the position in regard to the home help service shows, for example, expected expenditure this year of €211 million by the HSE, including more than €55 million development funding provided since 2006; an increase from 10.8 million home help hours in 2006 to nearly 12 million hours this year; and numbers benefiting increasing from 41,400 in 2006 to around 54,500 this year.

The home care packages are a relatively new initiative, introduced in 2006, and developed in the meantime across the country through a phased investment of €120 million new funding made available by the Government. A package comprises a variety of community based services and supports, including a significant home help element in many cases, to meet the needs of an older person. Clients may have significant medical, nursing and-or therapy requirements and may be recently discharged from hospital, or at risk of admission to hospital, if such needs are not met in a planned way. The HSE service plan envisages around 8,700 people benefiting from packages at any one time, or more than 11,000 people benefiting over the course of the full year.

It is important to stress that, notwithstanding current financial pressures generally, the Government has made every effort to protect home care services for older people. This year, the HSE aims to deliver the same quantity and quality of home help and home care packages nationally as delivered in 2008.

I understand that, in the first quarter of 2009, the HSE in Donegal provided 54,246 home support hours per month. This is in excess of budgeted hours, which is set at 52,000 hours per month for 2009. Since 2003, there has been a 60% increase in home help hours delivered to older people in Donegal. In addition, 191 people in Donegal benefit directly from home care packages. The local health office provides the third highest number of home help hours per capita to those over 65 years of age out of 32 local health offices nationwide.

The HSE has indicated it is intended to achieve efficiencies in service delivery, by reviewing the scale of provision on Sunday and bank holidays in particular where premium pay rates apply. The aim is to meet patient needs through a variety of supports, including public health nursing, day hospitals, day centres, home care packages etc. Any person who is dissatisfied with the level of home support can appeal the decision to the HSE appeals officer in the north west.

It is clear the Government has made considerable improvements in recent years to enhance home care provision generally across the country, including in Donegal. There is no doubt that demand can at times exceed service resources. I am satisfied, however, that the HSE will continue to deliver the home help service in the best manner possible, taking account of evolving financial circumstances at national and local level.

Senator Pearse Doherty

I thank the Minister of State for his response. I note he has referred to old figures. He mentioned the HSE in Donegal is providing 54,246 home support hours per month, which is 2,246 hours in excess of those budgeted for. I have outlined the position for the Minister of State. The truth of what is happening on the ground is that home help hours are being cut across the board in County Donegal. Is it the position that the HSE has to remain within its budget and therefore 2,246 home help hours are been removed from people in County Donegal? Can we be assured that the number of home help hours provided in the county will not drop below 52,000 per month?

Deputy John Moloney

I reiterate my response that the aim of the HSE is to deliver the same level of service as it delivered last year. However, I must add the caveat that it is reviewing the premium rates paid at weekends. That is possibly what the Senator has been hearing on the ground. The HSE intends to deliver the same level of service in terms of home support hours.

Services for People with Disabilities.

Senator Nicky McFadden

I wish to share one minute with Senator Cassidy.

An Cathaoirleach

That is agreed.

Senator Nicky McFadden

I thank the Minister of State for being present to note this serious matter I raise on behalf of residents in St. Peter's Centre in Castlepollard. My information is that a number of residents were to be moved from this institution and integrated into the community of the greater Westmeath area. As the Minister can imagine, this was great news for the families, particularly for the aging parents who would see their sons and daughters finally settled and living independently with dignity and in safety.

In 2000, the HSE purchased ten houses around the Mullingar area and these were left idle and allowed to become dilapidated and unfit for living. This is an example of the waste of money over which the HSE has presided and how it has failed the most vulnerable in our society. We have come out of a period of immense wealth, but people with intellectual disability could not be given their own space to live in, decorate as they wish, have their own possessions, cook and invite in visitors. It is a lack of the HSE prioritising people with mental health issues. I would like the Minister to come to the Seanad and tell us how many actions from A Vision for Change have been realised. Is it just another glossy document? It is in operation for three years and it arises here time and again.

In recent weeks, a number of the families have contacted me and informed me that three houses had been allocated. I have been particularly concerned about a case involving a daughter whose family was told the houses were not to go ahead. They were devastated. It has a knock-on effect for families. The houses were ready and renovated to a very high standard. The HSE is so uncaring and out of touch to have pulled the plug on this development just because it has inadequate staffing levels. The family contacted the HSE and received a cold-hearted, one-line e-mail. Can the Minister imagine if that were his son or daughter? I live my life by putting myself in the position of such people. The lady in question has been living in St. Peter's for 20 years and her family was so excited about her finally being settled once and for all. It is high time she and her friends were allowed to live with dignity and independence. The Minister is familiar with the model of choice whereby the individual has a service designed to meet his or her particular needs and it is the most respectful way we can support people with intellectual disabilities.

Why does the HSE not work a shift staffing system like the other non-statutory organisations? In the non-statutory sector there is one member of staff for one resident, whereas the HSE has nearly twice as many. The Mental Health Commission has said it is more important than ever that the Government stick to its commitment to ring-fence funding from the sale of all the mental health institutions, which the Minister is reviewing, and I urge him to ensure that happens and that the money is not subsumed into the black hole that is the HSE. Mental health has always been the poor relation and I fear people with mental health issues will be even further down the pecking order.

I am aware the Minister is connected with what is going on. I ask that the staffing moratorium be lifted and the whole-time equivalents needed be provided so these residents can get on with their lives.

Senator Donie Cassidy

In my home town of Castlepollard I can look back to when the Cathaoirleach was chairman of the health board and the Minister and his father were members of the health board with us when we took the decision to place these very important patients out in the community. It was a great step forward. I thank all the members of the board at that time who allowed the three fabulous residential houses in Castlepollard for patients to come out into the community and give them a quality life in the beautiful rural lake district of County Westmeath. I look forward to quality living for these patients in the future.

The outstanding staff in St. Peter's Hospital over the years have given these patients tremendous care to allow them to come out into the community and give them their independence with help and support. We, as public representatives in the midland health board area, worked as hard as we could to get the Minister and Government of the day to put the funding in place so this could happen. The Minister comes from the midland district and has the practical experience along with all of us who served on the health board. We can say this is a great day and if staffing levels are the problem we want to stress to the Minister, as Senator McFadden said, that it is a wonderful step forward in quality living for the patients who will be the beneficiaries for the rest of their lives.

Deputy John Moloney

I thank Senator McFadden for raising the issue, and Senator Cassidy. I thank Senator McFadden for the invitation to come into the House, and I will do so. I do not mean to long-finger this. I do not blame any Senator for expressing concern about the recommendations in the Government's reform programme, A Vision for Change. It is fair and proper for me to say that not alone is Senator McFadden dissatisfied with the pace of change and implementation of the recommendations, but Dr. Ruth Barrington and the monitoring committee for A Vision for Change have already made those points quite clearly, as has the implementation body.

I will outline my strategy in this area. It is very important that a number of parts of the programme for reform be put in place first. Over the last three years many people have asked for a lead director, somebody specifically with responsibility for driving A Vision for Change. Part of my ongoing proposal to start delivering the recommendations was to put such a person in place. I am pleased to tell the House that last week the HSE has accepted that and will very shortly interview to put the lead mental health proposer in place to deliver on that.

My second point deals with Castlepollard. I fully support the notion that in an era where we will not have new development money it was never more essential to provide funding for mental health. I see that through the sale of assets and the realisation of the values there. This message keeps getting lost. I am not saying Senator McFadden is losing the message; far from it. I do not mind any Senator being in some doubt. The reality will be very clear. A Vision for Change is predicated on delivering the recommendations based on the securing of the asset value. If that is not the case, that means A Vision for Change cannot become a reality. A Vision for Change is the current reform package in mental health and whatever funding is secured from the sale of properties will be ring-fenced for mental health.

People can suggest that this has not happened in the past. I will not waste time delving into the past. I can talk only in terms of the enactment of A Vision for Change. The revenue from the properties that have been sold since the publication of A Vision for Change amounts to €54 million. That figure was raised by the sale of St. Loman's Hospital in Dublin. There was never any suggestion of selling St. Loman's Hospital in Mullingar. People there thought I was very cutely coming in at dark of night to sell off St. Loman's Hospital in Mullingar and disappear back to Mountmellick. That was never the case but, unfortunately, the press release apparently gave the impression it was St. Loman's in Mullingar. That €54 million will be the first tranche of money going into delivering the recommendations.

The most important development has been that the leader in mental health will report specifically to the Minister. That person's role will be to deliver on the recommendations. To answer the Senator's questions, I look forward to coming to the Seanad. I am asking for some time for the moment. I have targeted September to revisit A Vision for Change and to make clear commitments on when the properties will come on the market and what they will deliver by way of capital programmes.

It is very important to deal with ongoing revenue demands. In that context, I am working with many of the organisations providing mental health services to see how we can deliver that package. I do not blame Senators for wondering whether A Vision for Change is alive. It is and if they give me some months, I will prove that.

The matter raised relates to A Vision for Change. It depends on services in the community. Castlepollard is one example of that. Where properties are secured for the delivery of community supports, the follow-on is that I must, in some way, find the resources to ensure staff can be provided to those houses.

The co-ordination and planning of services to meet the needs of people with disabilities form a central tenet of the national disability strategy. A critical element of such co-ordination and planning is the requirement to provide financial support for the development and implementation of services. An integral part of the national disability strategy is the multi-annual investment programme announced in the 2005 budget which provided €9 million for services.

In terms of services for people with physical and sensory disabilities, 275 new residential places and 911,000 extra home care personal assistance hours have been provided. A total of 406 places in the intellectual disability residential service have been enhanced, 61 respite places have been enhanced and 43 residential places in the physical and sensory disability service have also been enhanced.

In regard to the matter raised by Senators McFadden and Cassidy, I understand from the HSE that there are two phases to the transfer programme from St. Peter's care centre for residents into smaller domestic-type dwellings in the community. I further understand from the HSE that 15 residents were transferred in 2003 resulting in the closure of the full unit known as Hilltop. They are now living in the community. According to the HSE, phase one of the transfer programme has worked well and has impacted very positively on the lives of those residents.

At present, the HSE is in the final stage of phase two of the St. Peter's transfer programme. This involves the opening of the three houses to which the Senators referred. It will mean the transfer of 17 residents from St. Peter's care centre and the closure of the full unit, Manor House.

The houses are now ready, the residents have been identified and the preparatory work has been undertaken. The HSE has confirmed that it is currently considering staffing this phase of the programme from within its existing resources.

I reaffirm the Government's commitment to people with disabilities. The Senators asked when staffing levels will be resolved and when the houses will be opened. I have met many of the families involved and have given them a clear commitment that this is an issue which I am pursuing with the HSE and the Department. This morning I renewed negotiations and talks with the Department of Health and Children and the HSE. Having embarked on that strategy, it is up to us to work out how we will staff not only Castlepollard, but other properties. It will not be long-fingered and I intend to come back to the House as quickly as possible with those proposals. Naturally, I must accept the stark reality that the houses have been prepared, the residents have been notified and the next step is to ensure the transfer happens as quickly as possible.

Senator Nicky McFadden

I thank the Minister of State for the very detailed and comprehensive reply. I know he will do his best and I thank him for that. A number of people retired in Castlepollard and that is the reason for the problem. They do not have the staff. From where will they get the staff? I commend Mr. Joe Ruane and Ms Maura Morgan from the HSE to whom I have been speaking. They are at their wits end. It is through no fault of theirs; it is just the staff are not there. The moratorium will have to be lifted.

Deputy John Moloney

I understand Senator McFadden is seriously concerned. I have met Ms Maura Morgan, Mr. Joe Moran and Mr. Donal Fitzsimons. I do not want to give the Senator an answer for the sake of it. I accept fully this issue must be dealt with. The Department and the HSE must work out how we can increase staffing levels. This morning I gave the Department certain figures and have asked whether we need that level of staffing.

I have given a commitment to deal with this issue. The same situation applies in my home county and I want it dealt with as quickly as possible. My ambition is to close the Alvernia unit for the intellectually disabled attached to St. Fintan's hospital in Portlaoise, not tomorrow but yesterday, and ensure the people are accommodated in the community. I have made that commitment which is an essential part of what A Vision for Change is all about. I see little point in delaying this while at the same time telling the Senator I am all for A Vision for Change.

The Seanad adjourned at 8.10 p.m. until 10.30 a.m. on Thursday, 21 May 2009.